aiming for grace

opportunity?

I've been thinking about what aimee mullins said about the opportunities her disabilities have presented her. On one level I recoil at the idea of seeing disability or chronic illness this way, fearing that the tired, "be positive", new age-y proselytising is just around the corner. But I don't honestly think she was just saying "look on the bright side" here either. Hm. Opportunity. At the end of the day, that hasn't been a concept I've every really considered in terms of my diabetes. Coping, trying to feel whole, aiming for grace, yes. Opportunity, not so much.

The other day, at a quiet moment, a very clear and simple question just popped into my head. If I were to consider the idea of opportunity in this experience of chronic illness and diabetes, what would that look like and mean? What is the opportunity, if any, does my diabetes offer me? The question just hung there in the air, quietly, lightly, without any judgement. It was a bit profound actually, to hold up this experience I've had, that I'm having at this very moment and turn it around to look at it from a completely different vantage point. What is the opportunity my diabetes offers me? I'd never asked myself that question. Never.

What happened next was surprising. Again, quietly, as if suspended in air, a tentative answer presented itself. If I look at my diabetes and all the hoopla and time I have to devote and details I have to focus on as my true reality, what comes up is this. Diabetes offers me the opportunity to gently, justifiably, kindly tend to my health. It offers me the chance to truly and deeply care for myself. It offers me a life path of nurturing and care, not unlike a gardener tending to their garden or a parent nurturing their beloved child. Diabetes offers me the chance to pay attention to my body, my health and ultimately, to life itself.

That's the answer that presented itself when I asked the question. There it was.

Now I'm not saying that this idea negates all the other things I feel about diabetes, the loss, the burden, the weariness. But it's interesting to add to the "hand of diabetes truths" the idea of embracing the opportunity it presents. I'm not sure I totally buy this yet but I'm certainly open to considering it. Up until now I've only seen diabetes as a thing that gets in the way of living a full life rather than a chance to profoundly celebrate living. At the very least, it's an interesting idea to hold in my heart for a while. And hey, if it brings me some peace and comfort in the process, it's certainly worth the consideration.

healthy vs. normal.

For years people have said that even though I have diabetes I can live a "normal life". I've struggled with this idea for a long, long time but thanks to a bit of an epiphany a few years back I no longer feel that normal, in the most normal sense of the word, is really my goal. Though I know most people mean well when they say this kind of thing, for the longest time I reached for the state of normalcy that they were referring to and that I'd had before diabetes. I reached for it and failed dismally in the process, because of course it wasn't possible. And even though people do mean well when they talk about the "normal life" I lead as a diabetic, in the process of saying it, they are oblivious to (and unintentionally negating) all the hard work it takes to appear so "normal". Normal went out the window with 6 shots a day for 16 years followed by 6 years of life on the insulin pump, countless blood tests and the analysis of pretty much every ounce of food I've eaten and every moment of exercise I've done in the last 22 years. What's normal for me now is anything but normal in the way other people talk about it.

No, normal defined that way is not what I work so hard for anymore. Healthy is my goal now. Healthy with diabetes. Healthy in spite of diabetes. Healthy even because of diabetes. I want to be healthy and happy and comfortable with my life as it is now. My goal is to have wholeness and vibrancy and well being become my normal, and to not worry anymore about being "normal" like everyone else.

noisy momentum.

In my last post I spoke of a momentum I've been feeling around the idea of better design in the medical realm. The more I think about it, the more I think that something's afoot in the greater world of medicine and design. Something's definitely happening and I'm pretty excited about it to say the least.

Consider what the architect Michael Graves said of his first impressions of the hospital he found himself in after he became paralyzed and wheel chair bound in this Metropolis article written by John Hockenberry: "He likes to tell the story about how during the worst days of pain and uncertainty he pleaded to anyone who would listen not to let him die amid so much ugliness. After a lifetime of seeking beauty in everything he designed and obsessively making sure every detail in his physical space was selected to be purposeful and beautiful, he was suddenly trapped in a world of mundane medical objects. “Everything was ugly,” he says. “Nothing was designed. It seemed as though the makers of these objects never had to use them. There was no color, no style; nothing about any of the objects said that a human had made them. It was outrageous.” Graves said he once had his doctor come into his hospital bathroom, where he was trying to shave from his wheelchair: “ ‘Who designed these bathrooms?’ I asked him. He said, ‘Experts.’ I said, ‘Oh, really,’ and I had him sit down and look at himself in the mirror, which was too high, and then turn on the water, which was out of reach. It took him two seconds to get it." Graves, at another point in the article, articulates beautifully something that gets to the heart of the issue of design in the medical realm: "People who become disabled have to radically redesign their outlook about the physical world. They redesign their sense of privacy and their sense of independence. Yet in the products they have to use, design has abandoned them."

Amen.

Or consider what Virginia Postrel so beautifully articulated in this recent post (where she also kindly linked to a recent post on aiming for grace): "The more I think about the sorry state of health care aesthetics, the more I think part of the problem is that we have an "acute care" model of medicine in a world where chronic diseases are increasingly the rule. If you only go to the doctor occasionally, you won't care nearly as much about how things look as you will if you're spending a large part of your life in clinics of various sorts. The same is true of medical devices. A diabetic who uses a pump all the time for life will benefit far more from something that looks good than someone who has a one-time, or even short-term, encounter with some kind of medical gizmo." So insightfully put! Design matters more when you have to interact more with designed stuff. Especially when you have it interact with it 24/7. Especially when you have to use the stuff to live. Especially when you have no choice.

Amen again.

What occurs to me is that all this talk, this momentum if you will, is a result of a number of interesting, converging factors beyond the simple conversation about design. The first factor, and in my mind the biggest, is an idea I've touched on before after reading Jill Sklar's great book. When you look at the long history of human life and disease, the state of chronic illness is really a very new thing. Before the last century, people pretty much got sick and then they died. These were the times before antibiotics, insulin, vaccines, widespread understanding of hygene. These were most certainly the times before the internet or the human genome project. In the context of human history, the last 100 or so years are but a blip, and the state of living a life with a chronic illness is really a thoroughly modern phenomenon. It's an unprecedented, revolutionary thing. Science has made this modern state possible, but as is often the case with life altering innovation or breakthrough, the cultural institutions of the society, the technology surrounding the science and the realm of design, all follow behind.

The idea and experience of chronic illness is "new" when looking at the big picture of human history. Yet, as Virginia Postrel mentioned in her post, we live in a time where living life with a chronic illness or condition is becoming more commonplace. Again, thanks to advances in medicine and science, we are living longer than ever before in history, meaning that most people will be managing some kind of health condition at some point in their lives. An article by Thomas Goetz from yesterday's NY Times magazine put it perfectly, "As we learn more about disease and are able to identify it earlier, more and more Americans will fall under the rubric of 'patient'". Or as a woman quoted in that same article says, "Pretty much everybody I know over 45 has some kind of medical condition. Some people have had cataracts surgery, or they have high blood pressure, or high cholesterol or diabetes. Everyone has something. And if everyone has something, that really levels the playing field." The sheer weight and volume of more people living in that state of being, also contributes to a new awareness of the issues people with chronic illnesses face. I would posit that the result of this fact is an emerging awareness, a new sense of urgency and most importantly, a higher level of demand for a better experience around life with chronic illness.

Another key factor in this possible new momentum is of course the internet. At it's best the internet connects people who are sharing an experience such as chronic illness, allows them to share information, insight and feelings, and over time, amplifies their voice in ways never before possible. I know that's happened to me personally in writing this blog. At first it was such a revelation and joy to find others who knew the strange world of diabetes that I inhabited. Then over time, I found my voice change and become stronger as I not only understood that I wasn't alone in my journey but that my feelings and ideas about that journey were valid and true. My view of my experience became more real and as it did, my ability to analyze it and express it with some distance and clear insight got greater. For years I was stuck in the isolated and singular place of being one person with a chronic illness, lonely and struggling to fit in to a "normal" world I was no longer a part of. Thanks to the internet and blogging, I no longer feel alone and I now have a new philosophy about normalcy. A new normalcy. My idea of this new normalcy is defined by being whole with disease, rather than feeling less than whole because of it. I can't help but think that this personal journey is happening all over the internet, between blogs and forums like the diabetes OC, tudiabetes or diabetes daily, and media channels like dLife, and open source medical information websites like PatientsLikeMe, to name just a few examples. All these isolated, single individuals experiencing chronic illness, disease and physical limitations, are now starting to collectively add up to an amplified picture, source of insight and in the end, a much harder voice to ignore. It's definitely getting louder out there!

Given all of these factors, the relative "newness" of the chronic illness state in society, the fact that more e people are living in this state of chronic illness thanks to the advances in medicine and science and the compounding, amplifying ability of the internet, it feels like times just might be beginning to change. This convergence of factors might mean that the experience of disease will be considered as important as the science of it. It might mean that a new definition of normalcy can emerge in the process of this evolution. The momentum around new normalcy and better design and patient voice feels real to me. It feels hopeful and progressive to me. It feels like there's certainly a lot more noisy conversation on the way. And that can only be good in the long run.

aiming for grace: 20 things I know about diabetes.

I owe Amy a big thank you for her kind review of my new little book aiming for grace: 20 things I know about diabetes. To be honest, I'm feeling a bit funny about even talking about it. More than anything, making this series of posts into a self published book has been a terrific exercise, a healing process, to be honest. The fact that there's a book that people can have if they'd like, is a very nice result of a personal exercise that's been helpful and positive to me as an individual. Making something from nothing has always really helped me for some reason. A piece of art, a story, a blog post, a book. Taking an idea or feeling from inside and pushing it outward into a real form that I can see and feel has always made sense to me. It's always made hard things less difficult to deal with.

That was the core idea behind the aiming for grace exercise I did a couple of years ago to commemorate my 20th anniversary of living with diabetes. It was so very helpful, 20 posts over a 2 week period. Surprises and revelations that I hadn't expected, confirmation and celebration of what I'd learned so far. It helped so much to see the ideas rather than just think them. Doing the exercise did exactly what I had hoped it would by creating a milestone and documentation of all that I knew so far. It honored my journey for myself.

After doing the exercise on my blog, I decided to make 10 one-off copies and have them bound in a book format to give to my family and friends and doctors, to acknowledge their help in my journey and to thank them for their support. There was something so amazing about take the idea further, from inside my head, onto the blog with it's virtual format I could see, to a book format I could touch and feel. The process somehow made the ideas feel more real to me and just as importantly, it gave the people who received the book a chance to interact with the ideas in a more intimate and personal way. I don't know what it is about books, but there's something about the weight and feel of a story in your hands, physically revealed with each turn of the page, each picture and phrase. Everyone, to the person, commented on how they had learned something more about diabetes because of the book, a result quite frankly I hadn't expected. These were people who knew the disease well or at the very least, knew me well, and yet because of the format, were able to interact and understand diabetes at a different level. Who knew?

Since I went through the exercise of making the one off books, some amazing technology has come to be. In the last couple of years the ability to self publish has become possible in unprecedented and relatively affordable ways. Thanks to services like Blurb, iPhoto book, and Lulu to name a few, it's fairly easy now to publish one's own content in a beautiful, professional way. Each company has a interface that makes it possible to drop your content into their format and then for a price, based on size, number of pages, and whether it's hard or soft cover, they will produce the book for you. Simple as that.

So what's happened is that the insight from my experience with making the aiming for grace exercise into a book has combined with this happy new technology of self publishing and voila, my little book was born. I kept thinking about how people internalized the ideas differently in a book format and I thought that other people might like to have the choice to see the story that way too. All the original content still lives on the site and can be read anytime here. What's fun is that now if someone wants to have it in a swell book format, they can have it that way too.

you say tomato, I say toma(h)to.

I had the recent good fortune of doing a personality profile test as a team building exercise at work. I have to admit that I love these kind of things. I'm sure it's not a perfect science or anything, but who isn't at least a little interested in finding out some more about themselves? And I'm sorry, these things can be eerily accurate, like someone's been listening in on your thoughts, and taking damn good notes in the process. Cue the Twilight Zone music. Really. It was weird and fun and very revealing.

The purpose of this exercise is to help us understand the places we naturally go to in terms of interaction, communication, dealing with stress, problem solving and expression, among other things. And more importantly, it's designed to help us understand that others have their own natural places that they go to, and as such, there might be a different way to deal with different people in the same situation. One person's way of coping isn't necessarily their co-worker's way of coping. Not a big surprise, but when looked at as a group, it's a very enlightening, helpful and at the end of the day, great team building exercise. At least I found it so.

Now this isn't about personality tests per se, but rather the idea about how a given personality can deal with the same experience differently. Or more importantly, one personality might deal with certain parts of that same experience really well, while another personality, not so much. Like with diabetes. Take for example, the need to document blood sugar results. I'm most certainly not an engineering type so the tedious details, the charting, the minutea of this disease absolutely drives me up the wall. I feel burdened and boxed in by it. I hate it the most of all the parts of dealing with this disease, hands down. But someone else who's personality is suited for that kind of thing, might find solice or a feeling of power in doing the tracking and watching the details. They might actually like it. Which raises a important question for me about personality + diabetes. How does one personality type deal with the same disease state vs. another? Do our doctor's even think about this when they roll out the "how to do diabetes" tutorial, hand us those carb counting charts and send us on our way? It feels like there's basically one protocol for approaching the management of this disease and it seems like it's pretty much one size fits all to me. Obviously there is stuff that has to be done to manage this disease, but that doesn't mean that the protocol couldn't be designed in a way that frames it more organically and in sync with different personality types. No charts and graphs for my type, but maybe more of a goal oriented, milestone strategy for me. For someone more meticulous, it's a formating and pattern recognition exercise. Same goal (testing and overall better control), different framing and systems to get there. A protocol approach that aligns with a person's"natural" tendencies or personal style. Wouldn't that be amazing?

Now, I'm not talking about doing this just because it'd be nice. I'm talking about this approach to diabetes management protocol because it sets each individual up for better success. Tailoring the individual approach to diabetes to insure a higher likelihood for initial compliance and long term health. That seems smart to me. I'm struck with the fact that so much of figuring this stuff out is up to us, which is random at best. It's hard to develop a good strategy from inside your own experience and head. I happen to work at a place that realizes the need and merits of insight into personality because it translates into higher productivity and effectiveness of a team. And they don't expect us to sit around figuring it out for ourselves on top of doing our jobs. This idea makes even more sense to me when we're talking about our health. Higher productivity (compliance) and more effectiveness (better control) means better results overall. Better diabetes results. That's the goal, right?

So I'm sitting here imagining that a newly diagnosed person might go to their doctor one day, to get their blood tests, their A1C, their new diet plan and a personality test. "OK, so you're this type of a person, madam, so here's how to approach your diabetes care", framed up in a way that makes the most sense to her. Imagine how cool that would be. Imagine what a difference that could make. Imagine.

precious reserve.

Everybody has only so much reserve to deal with the annoyances and struggles in life. As I get older, the idea of my reserve as a precious thing has become clearer to me. Especially in light of my life as a person living with diabetes. Diabetes taps on a lot of my human reserve, some days more than others, but certainly to some to degree pretty much every day. For me the choice I see isn't whether or not to deal with what diabetes presents, but rather, with what level of grace and composure I can muster in dealing with it. And that's where that wonderful, little savings account of energy and wisdom comes into play. That's when I tap on my reserve. And usually, knock on wood, I can rally, or find comfort, or just take a nap thanks to my reserve. Yes indeed, a reserve is a very precious thing.

So what's recently occured to me is that precious reserve I have, is a thing to be protected and cherished. It's an important tool in my diabetes tool box that shouldn't be frittered away on silliness or wasteful things. Like unnecessary drama or people who drain my energy or situations that just won't pay off in the long run. I know these people and situations, and I'm realizing that if I choose to be there too much, I have that much less of my reserve left to deal with the dramas and situations diabetes will most certainly present at any given moment. My reserve is not endless after all. It can be tapped out. It needs to be replenished with energy givers and comforting experiences and just plain fun. I don't know why but this feels like a pretty big revelation and game changer for me.

Now I'm not so delusional as to think that all of the everyday annoyances of life can be avoided. Life has lot's of dramas and drama queens and kings that you just have to deal with. But what I'm just beginning to understand after 21 years with diabetes, is that where I can, avoiding the people and things that unnecessarily drain my reserve is a really, really good idea. Diabetes is unrelenting and unending. My reserve is not. Focusing my energy and time on taking care of replenishing and feeding it, means I'm better equipped to cope with all that diabetes throws my way. And that's something that can only be really good in the long run.

understanding more.

My husband just got back from a long vacation with friends. For a number of reasons I didn't join them on their adventure. Some of the reasons are just regular reasons around schedule (I needed to be at work at the time they all could get away) and preference (8 people in a condo isn't exactly my idea of fun) and energy (lot's of plane rides and lot's of time to get there). Check and check. The other reasons were more diabetes related, having to do with ability (I can't scuba dive as a diabetic on the insulin pump) and reticence (I've had bad experiences in the past with people around being seen as pushy and a drag because of the schedule and regimen I need to follow with food and exercise) and a general lack of energy around a big vacation like this one (to plan for all the details of travel and all the unknowns of a new place). And then of course, there was the ever-present fact that I didn't want my diabetes to stand in the way of his fun. I hate that idea and worry about it quite a bit. How to navigate a partnership in light of the unending presence of diabetes is at times challenging. Not insurmountable, but definitely challenging. Like vacations for example. There's more to think about in our case than when you don't have a chronic illness to deal with, that's for sure. In the end, all of this added up to us deciding that he would go and I'd stay home. On paper it made sense, but like so many things, the plan and the experience can be very different.

Throughout the 10 days my husband was away, I found myself vaguely angry and uneasy. It honestly wasn't that I was angry at him. No, it was something else, but I just couldn't put my finger on what. Which didn't make sense to me. We'd talked about it and we'd decided that this was the best solution. What was the deal then? Why was I so out of sorts?

When he returned we sat down and talked about it all. No anger, more from a healthy curiosity and mutual desire to make it better. After much discussion, what it basically boiled down to was 2 things. Hurt and fear.

In the first place, I felt left out, pure and simple. Off they went without me, doing stuff I couldn't do, checking out in a way I could never check out. They were able to not only take a vacation from the daily grind, but also a vacation from diabetes. A vacation from diabetes. Wow. The idea is almost unimaginable. It was something I want so profoundly and something I can never do. I so wanted to be a part of their group instead of mine. Yep. I felt left out in a big way.

The second thing we discovered in our discussion was that I also felt afraid. I was afraid that if I'd joined the group, in a circumstance that required them to spend 10 days with me and my diabetic life, they wouldn't have understood and consequently wouldn't like me anymore. Worse yet, I feared that my husband would decide that life was so much better without having to deal with diabetes on a day to day basis, that he too wouldn't like me anymore. Given the choice to live with diabetes or not, I could imagine a person, even one that loved me, running screaming for the door.

And it's not like my fears are unfounded. This has happened to me before. It's been a long time since then but the memory of it's devastating impact on me is clear and sharp. Until my husband and I talked about it though, I didn't realize how much it was still impacting me. I thought I had moved on, but clearly I hadn't. Even though this was a new day with new players and even though my husband wasn't this other man, I was projecting my painful experience and consequent fears on this present event. Ok, so now I understood a bit more about what was going on here.

Wow! It felt like we found a diamond of an insight. Hard but precise and in a strange way, beautiful. It's an insight that both my husband and I can work with. Diabetes and the fear of rejection. That's not one you read about in the manuals you get from the doctor. No that's one you don't expect to have to experience on top of having a disease, but unfortunately you can. Being different, being misunderstood, being seen as difficult or selfish or demanding when you're actually taking care of your disease, can have real and profound ramifications. Trying to balance the desire to fit in and the need to take care of yourself, can develop into a real reticence to try new stuff or risk joining in again. Feeling safe and understood isn't easy with this disease. It takes a lot of explaining on my part and a willingness to listen on the part of others. And this experience has taught me that sometimes even I don't know what's driving my feelings. In that case, how can I give people the clues they need if I don't see them myself?

So what we're going to do after all this, is take some time to figure out the best vacation that works well for us both. Something that will be fun and relaxing and healthful and easy. And yes, something that might stretch my comfort zone a little in terms of adventure and unknowns. We're going to talk about it more beforehand and not make assumptions without checking in with each other. With a little effort and a little exploration, we're going to go on a vacation. Sometime soon, some relaxing fun will be had by all. And I can't wait!

This experience reminded me, yet again, that living my life with this is disease is a process. A journey, as a person coping with a very difficult and complex disease, as a person dealing with all that is not understood by others, as a person so vulnerable to the vageries of this disease and in turn, the kindness of others. A kindness that is demonstrated to me every day. And a kindness that sometimes isn't demonstrated and can boil down to insensitivity and cruelty. In the end, it's a process of searching for and finding a few safe people and a place to just be. In the end, it's about learning and trusting and starting over and building and taking care. Of myself, my relationships and my health. For me, that's the best I can do.

opposites made whole.

In the spirit of living well with chronic illness, I've been thinking about what that end state actually looks like. When I look at the diabetes made visible pool, I am so moved by the strangeness of all the stuff we use to manage this disease, juxtaposed with the regularness of our lives. Weird medical objects and then our other life stuff. As I think about living in between the definitions of health and illness, I'm struck with the need to make a picture of what healthy with diabetes looks like for myself. I'm a visual person after all, so I want an image of the goal. Healthy with diabetes.

Healthy first. But with diabetes too. For me, there has to be an acknowledgement and visibility of what it takes to do this disease well. To do it at all. My picture of healthy with diabetes needs to include the reality of my life with this disease. It's not devoid of the blood tests and a1c's and carb counting and pumps. It's not as if I could be healthy without all that stuff. No, for me the picture includes that stuff and honor's all the hard choices and vigilance and determination it takes to do this disease with eye's wide open.

Because I'm a designer, the world of objects matter for me. Things, objects tell stories to me. As I've begun to think about this idea, I've gravitated to that world of things, to help draw myself this picture I'm in search of. This funny cup and this wonderful handmade toy are a couple of examples of what come to mind for me when I think about what healthy with diabetes looks like. It's a first step, and maybe too obvious in it's expression, but regardless, these things speak to me now. They're pretty and funny and delightful because they embrace medicalness (symbolized by the red cross) AND good design (porcelain and gold gilt; whimsical fabric and button wheels). There's a confident, happy presence about these objects. And they're special because they embrace what at first feels oxymoronic. Pretty and medical? Playful and serious? They embody opposite states to make a new whole. Like I do. Healthy and chronically ill. Opposites that when seen together in one place, are compelling and surprising. New forms. Modern forms. Opposites made whole.

Hm. Now that's an idea that helps makes the picture a little clearer.

(PS. I unfortunately have lost the links to the above featured objects. A thousand apologies to the designers who made them.)